5 Meaningful Ways Being a Special Needs Parent Has Shaped Me

Parenting a child with special needs is both heartbreaking and magnificent. There is so much fear, so many doctors appointments, so much bureaucracy. But there is also so much beauty, joy and laughter. I try to focus on the magnificence of it.

This is not an exhaustive list of all of the magical things that come with this role, and I’m hopeful that my friends who are on a similar journey will help me add to the list below.

1. I’ve learned to focus on what’s really important.

I’m completely out of the loop on the latest TV shows, music and fashion trends. I don’t really care. Things I once obsessed over (like Ferragamo shoes!) are secondary, or even tertiary in terms of what I think about on a daily basis. And it saves me money, and time.

2. I’ve learned to be mindful and fully present.

Well, most of the time. We’re all human, after all. But when you have a child with disabilities, you are so very present — while you’re playing with them, when you’re advocating for them, when you’re at the hospital talking to the doctors, when you’re strapping them into their equipment.

I try to carry this over into my non-mommy time as well. When I’m at work, I focus on work. When I’m doing the dishes, I focus on doing the dishes. And if I start to worry, I bring myself back to the task at hand. I’ve not perfected mindfulness outside of my “Mama bear” role, but I’m getting better at it every day. And I’m becoming a better person because of it.

3. I recognize that each and every day is full of miracles — small and large.

Every day my daughter wakes up, gets out of bed and runs to the kitchen to patiently wait for her breakfast — that is a miracle. When she communicates with me through her Tobii communication device — that is a miracle. When she puts her hand out to caress my face and give me kisses — that is a miracle.

4. I pay attention to my child and help her foster her interests.

Here in New York City, I often hear about parents putting their kids in a foreign language or ballet class — at the ripe old age of 2 — to help them get a competitive edge for their future. They’re so busy trying to position their kids for their version of success that they forget about enjoying their child and learning what their kid is actually interested in. My daughter L’s army of therapists and I celebrate and encourage all of the things she shows interest in, whether it’s planting and growing blue flowers, playing dress-up or reading her favorite books.

5. I’m much less judgmental.

When I see a kid having a meltdown in the grocery store, I don’t immediately go to, “that parent is raising a spoiled brat.” I have compassion. Deep compassion. And, if it seems appropriate and I’m able to, I offer a helping hand. Because I’ve been there before, and I know what that feels like. Practicing compassion and moving away from a “me vs. them” mentality can make us feel better as human beings and more connected to others around us. And I think that’s pretty cool.

Follow this journey on Blueberries and Giggles.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to community@themighty.com